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Transcript

If you’ve been here before, welcome back! If you’re a new jack, come on in…
take your shoes off if you like, it’s
not mandatory in my house, but I do want you to be comfortable.

Let’s get it! All aboard!
All Aboard!

[Audio: Ship Horn]
[Reid My Mind Theme]

TR:
In this second of our three part series, we’ll meet another winner of the Holman Prize.

The prize is named in honor of James Holman.
Known as the Blind Traveler, Holman completed a series of solo journeys taking him to all inhabited continents.

Sponsored by the San Francisco Lighthouse $25,000 is given to each of the winners who are all legally blind and in their own way exhibit the adventurous spirit and attitude of James Holman

Ahmet Ustunel Our featured Holman Prize winner today like James Holman, is quite comfortable on the water.

I spoke to him via Facebook Audio while he was at home in San Francisco.

Ahmet:
I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Ahmet:
Man, yeh, wow!

TR:

Retinoblastoma, is a rare childhood eye cancer that usually affects children before the age of years old.
By rare we’re talking about seven thousand children a year.

In the US and other developed nations the survivor rate is
around 90 percent with significant children losing sight.
In under developed nations, the rates are reversed and children’s lives are lost.

One common sign possibly indicating Retinoblastoma is a
white reflection in a child’s eye resembling that of a cat’s eye reflecting light.

Early diagnosis and treatment are key to saving both lives and sight.

By the time Ahmet’s cancer was detected, doctors in Turkey
were out of options to help.

Ahmet:

One of my relatives was in Germany working at a children’s hospital as a janitor so my Gran Ma took me there and they treated me there with radiation an enucleation.

TR:

Enucleation or the surgical removal of Both his eyes, Ahmet returned home to Turkey now as a blind child.

Ahmet:
I was lucky in terms of having really supportive people in my family. I grew up in a really big family. Everybody had a different approach in terms of blindness.

I was the only blind person in the family and even in the town I guess. I didn’t know any other blind person.

[TR in conversation with Ahmet]

Wow! How big of a town are you talking about?

Ahmet:
Maybe like ten fifteen thousand people.
Then I moved to Istanbul which is like fifteen sixteen million people and that actually changed my life.

TR:

Ahmet was aware of the contrasting dynamics in his family as it pertained to his blindness. Some were over protective while others wanted to help him do the things other little boys were doing.

Ahmet:
Ride a bike, tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:

These early lessons in the ability to make something accessible played a role in his education and future.

After not being accepted in a mainstream school , Ahmet watched as his peers went to school at around 6 years old.

Moving to Istanbul his parents tried to enroll him in the only school for blind children. With a waiting list Ahmet wouldn’t begin until he was 8 years old.

Attending school during the week and returning home on weekends, Ahmet credits this school with teaching him valuable life skills.
After 5th grade he would attend a mainstream school.

Ahmet:
They send you back to mainstream school with no support. So you go back to school with no books and no teachers for the blind.

I was the first blind student in the school. I had to prove myself as a blind person.

TR:

At an early age, Ahmet took his education and future into his own hands.

Ahmet:
I was walking around with my Walkman and asking everybody you know, can you read me a page or two.

[TR in conversation with Ahmet]

So you were basically learning to advocate for yourself at that young age?

Ahmet:

Oh yeah I mean absolutely I mean there was nobody to advocate for me.
I could choose to sit around and do nothing you know get a C and pass, but if I really do well then people and teachers and you know the principal will understand that I can do stuff and they will let me stay. And if I cannot do it
I will just withdrawal myself.

TR:
Ahmet when on to not only prove himself to the administration but gain the confidence in his own abilities.

He studied Psychology in college where he met his wife, a US exchange student.

But his early life exposed him to more than academics

Ahmet:

When I was in high school my school campus was right on the water, you can literally jump into the water from the campus.

[TR in conversation with Ahmet]

So is that where the kayaking came in, from high school.

Ahmet:
No actually I did a lot of you know water related activities since my childhood as I grew up by Black Sea.

When I was in college I use to go rowing and stuff, but I haven’t started kayaking until I came here.

TR:
A Kayak is a very narrow boat like vessel. You steer and move the kayak with a paddle that has a blade on each end. They average about 25 to 35 inches wide and 12 to 19 feet in length.

Ahmet:

So let’s say you have a kayak nineteen foot long and twenty eight inch wide. You can go really fast but it will be a little tippy.

If it is twelve feet long and thirty five inches wide it will be really stable but you will go half as fast as the nineteen foot one.

It’s made of either corrugated plastic or fiber glass, there are some inflatable models.
So you sit in it. And you’re like really close to the water if you put
your hand your right there the water is right there. So you’re like maybe four inches above the water.

And you have a spray skirt which covers the kayak. So if you have a splash water doesn’t get in and if you flip over you are upside down but know water gets in.
So you have to pull the skirt off the kayak and get out of the kayak and flip it over and get back in. Or you can do the special row it’s called Eskimo row. Without pulling the skirt off you can flip the kayak back and keep paddling.

If you go paddling in cold water like San Francisco the water temperature goes below fifty degrees most of the time. So you don’t want to stay in that water more than 15 minutes. If you stay more than 15 minutes they say Hypothermia kicks in.

TR:

So what does Kayaking have to do with the Holman Prize?

[Audio from Ahmet’s Ambition]

You’re listening to Ahmet’s Holman Prize Ambition video where he explains what he would do with the 25 grand.

[Ahmet in Video……]

I have been kayaking for about 10 years and I always wanted to be able to paddle independently. If I win the Holman Prize I will equip my kayak with high and low tech devices that will enable me to navigate the kayak by myself.

TR:
His mission…

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
You heard him correctly…
[Audio: Tape rewinding ]

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
Exactly what is required for someone to non visually, independently navigate their way through the Bosporus Straits from Europe to Asia?

Let’s start with the Kayak

Ahmet:
The kayak I’m going to use has kind of like fins going down from the bottom of the kayak kind of like penguin feet. And so you can pedal with your feet if you want or you can just do a classical paddle strokes.

I want to keep my hands free because I’m going to use whole bunch of different technologies.

TR:

No surprise here the technology includes an iPhone.
Ahmet:

I’m going to use a G.P.S. app – Ariadni G.P.S.

You can mark way points and it will let you know when you get close to that way point.

It also has a compass with degrees and tell you how far you are from your way points. And then I have a talking audible compass. Similar thing it will tell you degrees and you will set you course before you start and it will tell you if you are off course.

[TR in conversation with Ahmet]
and you will South your course before you start and it will tell you the field

Is that a separate device or is that an app?

Ahmet:

It’s a separate devise.

I will also have parking sensors or security cameras sensors.

[TR in conversation with Ahmet]
Probably the same thing they use when the cars park themselves… right?

Ahmet:

Right, right right! You know when you’re backing out so if you are about to hit something it beeps.

I have a depth whisperer.

[TR in conversation with Ahmet]

D E P T H?.

Ahmet:
Yes.

[TR in conversation with Ahmet]

Ok at first I thought you said death (laughs) I was like I don’t like that one!

Ahmet:
Laughs… I hope not!

It tell you if there’s shallow water underneath the kayak. If you are about to hit a rock or something .

TR:

Ahmet does have to prepare for all scenarios.

There’s redundancy in his technology so if one device fails another can provide the same or just as useful information.

Not all the technology is off the shelf. While searching for the best methods for non-visually navigating his way through the water Ahmet
came across Marty Stone.

Marty is an AT&T I.T. Project Manager by day and after hours…

Marty:

I’m just one of those people that like to tinker with things.

TR:
Marty created a device that simply put:

Marty:
It was developed to allow blind people to get a kayak and race it in a straight line and then turn around and come back.

TR:

Reading about this device, Ahmet reached out to Marty who decided to expand on the original design.

Marty:
Now we’re working on something that not only includes a compass but gyroscopes, accelerometers, and three different axis.

So you get a lot better information as far as movement and heading. We’ve got a G.P.S. module that’s it’s married to along with Bluetooth. That’s going to be interfaced with a device Ahmet will be able to wear on his life vest that will have some buttons that either he can program in some coordinates or commands to the system that he’ll just wear a headset and it’ll talk to him.
It’ll tell him that in order to get from where he is to his next way point he needs to row in a certain heading direction. And if he gets off course the system will tell him to paddle more on the left or paddle more on the right. And when he gets to a way point it will let him know and then he needs to change his heading to another course direction and then it’ll tell him that.

TR:
With both equipment and technology accounted for, Ahmet needs a few more things to be fully prepared to reach his goal; first a plan..

Ahmet:
Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

These tankers are the size of multiple football fields. A small kayak would probably go unnoticed anywhere near such a large vessel. And getting out of the way even if you could see it would be virtually impossible.

Ahmet:
I don’t want to take my chance with those guys!

TR:
The Bosporus being such a very narrow waterway. Authorities closely control the traffic flow in each direction.

Ahmet:

I will listen to the traffic channel. Usually they have half an hour or forty-five minute break in between and I will do my crossing during that time.

[TR in conversation with Ahmet]
Do you have to schedule this?

Ahmet:

Well, I talked to the Coast Guard in Turkey and they .. first they didn’t believe that I could do it and I showed my videos to them and they said ok do whatever, we don’t take any responsibility.
(Ahmet and TR Laugh)

There will be a really fast boat watching me from the shore. If something goes wrong they will come and pick me up in like few minutes.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology if the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.

[TR in conversation with Ahmet]

Why are you doing this man?

Ahmet:

I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free. I grew up in a fishing boat when I was a kid. My father was a fisherman. In the fishing boats I used to ask my Dad, you know can I steer the boat. he said yeh, you know, it’s water there’s nothing around you, it’s like miles and miles of open water. I used to take the steering wheel and just feel like I was the captain of the boat. And I was imagining like how can do something like this as a blind person as a blind kid. I always wanted to do something water related but my option were very limited in college.
If I grew up in the US I would have probably do something like marine biology.

I love what I am doing right now, I’m teaching special ed. It was always somewhere in my mind to do something water related and being able to do it independently. I have been thinking about it for a long time and I thought you know, it’s doable if I have the financial support I can do it.

TR:
I believe him. And I will admit it, partially because he is a fellow Retinoblastoma Survivor but mainly because he began as a child.
Think about the early lessons from his family helping him adapt all the different activities so he could participate…

[Audio in flashback Ahmet]

Ride a bike… tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:
Then becoming his own advocate at such a young age and showing such determination to get an education.

I imagine these are some of the qualities seen by the Holman Prize judges who awarded Ahmet the 25 thousand dollars to complete his objective.

Ahmet:

You know, I’m not saving the world or I’m not creating job opportunities or changing the lives of blind people , but I think I’m doing something cool!

At least it might encourage younger kids to try new things. I see that my students, high school kids, they get discouraged in terms of finding alternative ways… I think it will help.

Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

[TR in conversation with Ahmet]

It’s cool, you focus on kids, you’re a teacher so that’s what you do, but for anyone, you’re pursuing your passion and that’s something that we forget in life. To be able to say you’re going to go and pursue your passion and have a dream and do it that is a universal thing that goes way beyond any sort of disability. There are people who are perfectly sighted, physical abled who are not pursuing their passion and we can all learn from that.

Ahmet:
Absolutely, yeh, I mean you know, it’s not a blind or sighted thing. It’s just I think being adventurous and take a risk take a chance.

TR:

That’s probably the final ingredient necessary to complete this mission. courage!

As a young boy on the fishing boat with his Dad, Ahmet dreamt of becoming the captain. It takes real courage to go for your dreams. I’d say Ahmet’s been captain of his ship for quite some time.

If you’re interested in wishing Ahmet safe travels or want to follow his progress, go and Like his Facebook page; Ahmet The Blind captain.

TR:
Being affected by the lack of accessibility is frustrating. Especially when you know the so called limitation isn’t real.

It could be a website or program that doesn’t work with a screen reader. That was a choice. Probably not an intentional one, but if made aware of the problem and
a solution isn’t sought well, that’s intentional.

Companies usually fall back on the cost and yes there could be a cost to updating a product, but there’s no real cost to changing how we think and design for the future.

Inaccessibility is frustrating when you know that the reason for technology is to make our lives better.

That was one of the reasons I wanted to reach out to Marty Stone, the developer creating an enhanced device to help Ahmet stay the course.

Marty:
You can never accuse me of being an optimistic person I’m afraid, but I do hope that we can save the world with science, I really do. The world needs a lot of help and a lot of people really don’t trust science or scientist it’s kind of shameful.

[TR in conversation with Marty]
This is what technology is all about.

Marty:
Helping people…

[TR in conversation with Marty]

Yes!

Marty:
Absolutely, the stuff I do for AT&T is great and all that but doing this other stuff… this is the best stuff in the world. Volunteering and doing this other work. Taking some of that Geek ology and helping other people’s lives.. make them better. Man that’s just the dandiest thing in the world.

TR:
We need more of a bridge between the users of technology and the programmers, engineers, scientists … nerds.
Marty:
It’s cool to be a nerd now, yeh…. laughs.

TR:

The opportunity to profile Ahmet and his story came at the right time for me personally.
For the past few years, September has been a pretty busy time here on the Reid Compound.
As a survivor and a family impacted by Retinoblastoma, my family and I have spent the past few years telling stories to bring awareness of this childhood cancer.

September is childhood cancer awareness month. This year unfortunately we couldn’t produce the stories so being able to bring you Ahmet and drop a little info about this eye cancer means a lot to me personally.

In fact, I’d encourage you to check out some of the prior videos we have produced and see how the cancer impacted their lives. While these are videos the visuals included are enhancements, the story is told verbally.
I’ll have some links on this episode’s post on ReidMyMind.com.

I’m always hopeful that a story like Ahmet’s when presented in the mainstream media is done the right way. By that I mean, find and convey his message to the wider audience. In addition to the accessibility and self-advocacy I’m always personally encouraged when I see others going for their dream.

Ahmet was already preparing for the dream. He just needed the funding. His fortune, the San Francisco Lighthouse created the opportunity. Ahmet was prepared. Some say that’s the definition of luck… being prepared for opportunity

That’s another take away for me, be prepared for that opportunity. Begin moving towards your dream.

I hope the Holman Prize winners; Ahmet and Penny are encouraging you the listener to go for your dream if you’re not already.

I hope they’re encouraging you to subscribe to this podcast just
about anywhere podcasts are distributed… Apple Podcast, Google Play, Stitcher, Tune In and Sound Cloud

The world is going to be buzzing with this next episode, featuring
the final Holman Prize winner. Don’t miss it.

CC:
My Name Is Connie Chiu and I am partially sighted. I have albinism. The condition affects my eyesight, it effects my skin. Those two are the main things. I like to
look at it as a cocktail of conditions or a Smorgasbord of conditions to just make it sound a little bit more delicious

TR:
Delicious as in pleasing, agreeable or gratifying-
I get the sense this is an important theme for Connie.

Born in Hong Kong, at 7 years old Connie and her family moved to Sweden.

CC:
my parents thought you know she’s quite she’s got light skin she’s got white hair surely she would blend in better in Sweden with Swedish people. But I was just a little bit whiter than Swedish people and my hair was just so very very white. My features were still Chinese. So yes I did stand out in Sweden and yes I did stand out in Hong Kong as well. I’ve been to America and yes I stood out in America. So really I need to go somewhere with a lot of white Chinese people for me not to stand out.

TR in conversation with CC:
[Laughing] I don’t know where that it…!

CC:
[Laughing] I don’t know iether.

TR in conversation with CC:
Children are children so I’m going to assume when you went to Sweden, you said around when you were 7 years old, you obviously stood out in class so I am going to assume that some kids bullied.

CC:
Actually I was quite lucky you won’t believe it I was quite tall as a child. When I was about nine ten people thought I was twelve. So I think they were they
were all quite small, I thought all my classmates were so small you know boys girls doesn’t matter. I was like a head taller than what they were. I think that helped
I don’t know why but it kind of was a quite positive response. They sort of gave me gifts. They sort of gave me drawings. They gave me little presents here and there. They were just nice to me.

In Sweden they celebrate Italian Saint called Santa Lucia. Ideally you should be blonde to be Santa Lucia. In our class we had like a little vote. Then you dress up as Santa Lucia. It’s kind of a whole thing and you sing songs and you have a little parade. They voted me because of my white hair I guess. That was something positive.

It’s very hard for me to say why I wasn’t bullied in school but…

TR in conversation with CC:
I think I know, I think I know…
CC:
Oh, OK you tell me.

TR in conversation with CC:
Because you said you were so tall… I think you were bullying them? Were you bullying them Connie? Were you beating up these kids?

CC>
[Laughing…]
{Sarcastically} Yes. The secret part of my life that I never told anybody… [laughs…]

TR in conversation with CC:
I figured it out! Now, here’s the story!

TR:
Ok, Connie was not a bully. In fact, she says that as a child she was more like the quiet nerd, a real day dreamer.
Today, Connie is known as the first fashion model with Albinism.

CC:
The Thing is albinism is just one part of me.

I always loved beautiful images. I started actually behind a camera. I did an art foundation course and I was taking pictures of people and I had different ideas how I wanted my images and I try to make people pose in a way that I want. But then I kind of understood that well actually I knew exactly what I wanted so I started to take photographs of myself. It sounds crazy and I’m probably a bit crazy anyway so I just sent a black and white photo to a French designer with my phone number on the back. I did it because I admired his work, he’s a bit crazy to.

A few months later I ended up doing his Couture show in Paris. Even though I kind of liked modeling I knew nothing about it. I kind of didn’t know about the super models and so on. Of course they were all there doing the catwalk as well.

It’s just the passion of it drove me to modeling and you know it just in a way such an honor to be part of a beautiful image. iether it’s the catwalk or magazines or T.V. commercials … and it’s just great to work with talented people.

TR in conversation with CC:
The Catwalk, does that… the lights I am assuming that there’s a lot of lights and people taking pictures, how does that impact you?

Yes.

Well I wore my lenses, my light protective lenses and they were absolutely fine with it. Jean-Paul Gaultier and his team. Sometimes that’s all you need it’s not like big adjustments.

TR:
Accommodations that enable participation from a person with vision loss or other disability for that matter are often quite easy. The challenge is less about how to adapt but rather attitude.

despite Connie’s optimistic view on life, she still has to deal with situations where those she works with are less interested in accommodating her needs. Even when it’s something simple, like light protective lenses.

during a commercial shoot , producers ignored her request to reduce the room lighting.

CC:
I did point out to him that my eyesight is light sensitive. We’ll probably need to sort of work around the lighting so they were aware of that. So when I got there I saw that the light was too strong. I stood in the light, I stood on the set, it was too strong. I told them it was too strong. They turned the light down
a little and I said well actually it’s still a bit too strong.

In the studio a whole wall was just Windows really so there was day light on top of the studio lights you know.

So I said the them , Well actually if you could cover up the windows behind the camera that would take a bit of the light away and that would really help me. The team who did the interview all they said was actually we want as much light as possible. At that point I thought OK that’s the way it is.

TR:
She even told them she had her light protective lenses and
it would only take a moment to retrieve and put them in.

CC:
They kind of didn’t react to that whatsoever. They just said oh let’s just let’s just get started with the interview. they wanted to do quite a lot in about ninety minutes. They wanted to ask a lot of questions. They wanted me to wear different outfits. They wanted to take a lot of photographs. So I think those were the priorities.

TR:
It wasn’t just about the discomfort of the bright light; Connie was aware that her uneasiness would be reflected in the final image.

Ironically, this was a commercial where she was talking about her condition; Albinism which includes the extreme sensitivity to light.

CC:
I also thought to myself well actually I could walk out but I’m actually not doing this just for myself.

I don’t want people to fink this is how people
with Albinism usually look. This is only how people with albinism look when they are suffering from bright light.

Somehow I don’t think they realize that actually I felt like they took a bit of my dignity away. Because they didn’t listen to me.

TR:
It’s understandable how Connie would feel that way. But remember she’s an optimist. She’s all about making things sound delicious!

CC:
The situation is not ideal but there are things I can control. I can’t control the light obviously, but I could control the things I said, the way I felt, how I answered the questions.

TR:
These negative experience aren’t enough to dissuade Connie from trying. She does things for the right reason.

CC:
For me if I love something and I’ve really want to do I just do it I don’t even think about how difficult it actually is.

TR:
Connie’s currently pursuing another one of her love’s … singing!
It took her a while to build up her confidence while
pursuing her modeling career but she’s recently released an E P.

CC:

It’s Called my Huckleberry songs. In Moon River there’s a phrase my Huckleberry friend – it sort of means very good friends. My Huckleberry Songs are sort
of my friends in a way. Songs that I really like. For Moon river I’ve written my own guitar arrangement. It’s very simple but it’s kind of the way I see the song as well because I like to do something slightly different.

I perform mostly right now in the U.K. I love it performing live because that’s kind of what jazz is about to be in the moment. And things are never quite the same even though you’re sort of singing the same melody.

I think that’s another sort of common thing with my singing and modeling is daydreaming. [Sighs, as if discovering something new!]

It’s just to be able to use your imagination and you can be somewhere else. I think that that’s really what it is to be somewhere else. And I think people can feel it. it has happened when people say like you just took me somewhere else when you sang that song. I just went with you to a different place.
I tend to go to lovely places, so do come with me! [Laughs!]

TR:

If you want to travel to lovely places with Connie; you can purchase her E P from iTunes and Amazon or on CD direct from Connie…
She’s on Facebook, Twitter and YouTube…

CC:

Connie see o double n ie. My surname Chiu.
If you just search Connie and Albino on Google, it will all come up. (…my information)

TR:
I’m Thomas Reid for Gatewave Radio…

[Audio: extracted from Connie’s opening statement… Just to make it sound a little bit more delicious!]

TR:
Connie Chiu’s identity isn’t wrapped in Albinism or being visually impaired. That was a very clear point she made when talking about modeling.

She’s comfortable in her skin.

While she wasn’t bullied as a child and I still haven’t found the proof that she bullied the rest of the kids,
her method of dealing with those who are antagonistic is commendable.

If you are new to being the different person in the room, for whatever reason, Connie has something to offer.

CC:
I’m quite used to it now and I think the way I am as a person I don’t walk around and think about what I look like. It sounds very strange to a lot of people because “you look so different” but to me I’m just me. And it’s not until someone approach me and asked me about my hair and where you’re from When you get those questions you know that that’s oh yes oh yes by the way you know of course compared to most people I do look different. Of
course you will have a lot of people who would like to belittle you for whatever reason they can find. For me it’s quite obvious it’s like white hair and
I’m Chinese but it could also be that I’m not that tall really. So I think if someone wants to belittle you they will find a way after a while I think you learn to read people quite well and you start to understand where people are coming from. What’s behind all the things their saying. What’s behind their behavior. For me that’s quite important to me to understand for me to respond to them. So I think when some people try to belittle me or they try to make me feel different then I just embrace it. It’s like yes I’m different so what? Have you got anything else to add? I think it’s quite important of course that you have to be quite happy with who you are and being comfortable with who you are and I think it’s is that in itself it’s a learning process; ongoing process.

TR:

And then there’s something that I’m pretty sure impacts the majority… Pursuing our interests… for the right reason.

How many of us have dreamed of dancing, acting, writing or any activity, but we don’t pursue it. We have jobs, families , responsibilities…

It’s hard to justify pursuing our dreams.

When asking Connie why she decided to model, make an E P, perform on stage…

CC:
I know it sounds crazy but I did it just because I love it.

TR:
The older we get man we complicate things.

I’ll share my own experience…
I’ve always loved music.
I hear music in everyday situations… beats and melodies.
My family will tell you, I make up songs at the drop of a dime for no reason.
Yes, they’re silly… but their fun!

Ever since gaining access to a digital audio workstation;
that’s the type of software I use to record and edit this podcast;
I started recording some of these silly songs…
but honestly, not enough.
I tend to feel as though it’s a waste of time.
But it’s no more a waste of time than watching sports on TV… yeah I said it!

When the inspiration strikes, I should record..

Like during the production of this podcast, while researching Connie’s music, I came across this one song Surfing in Rio…
It was this one particular part…

Add that with Connie spelling out her name, like a rapper

Well, I had to do it! And I thought we should send a message to those commercial producers who wouldn’t listen to Connie…
Put some respect on that name!
[Audio: An original production by T.Reid using a sample of Surfing in Rio and added some Hip Hop drum beat and scratches as Connie spelling out her name (C o double n ie…) along with some quotes of hers yes, I’m different…
I call it Connie’s Jam! ]

TR:
What’s that thing you just love to do?
Are you doing it!

Seriously, holla back! reidmymindradio@gmail.com
let me know what you’re doing – I’d love to mention it here in a follow up episode…
that could be a source of encouragement for someone else.

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Now I’m off to pursue my other dream, to some a nightmare, interpretive dancing!

This episode features the latest Gatewave Radio piece answering the question; Who is the Girl Gone Blind?
Immediately following the piece, check out what happens when I run with a bit of inspiration from something I heard in my conversation with Maria Johnson, aka, A Girl gone Blind.

Resources:

Transcript

I’m feeling good today and that’s by choice not by circumstance… let that marinate.
And in this latest episode of Reid My Mind Radio I’m featuring a piece I did for Gatewave Radio…

Check this out!

[RMMRadio Intro]

TReid:
Going blind is a real challenge.
Different for anyone who goes through the experience. It involves adjustments for almost every aspect of a person’s life.
Education, Employment mobility and independence.

Today you will meet someone sharing some of her experiences online, on the internet via her blog.

TReid:
Girl Gone Blind, is Maria’s space on the internet, her blog where she’s been sharing experiences, observations and information about her life as a, well, girl who has gone blind.

Her story begins in April 2013.

MJ:
I was working as a fitness instructor. I was working at three different locations and I was also running my own Boot Camp as well as doing the mom things – running around taking my kids everywhere you know volunteering and all that stuff. And I noticed there was a blurry spot in one of my eyes but I didn’t really think too much about it cause I was busy and After a month or two it really wasn’t going away.

TReid:
TReid
With no changes in her vision, she sought an answer.
Multiple optometrist, ophthalmologists ; all trying different tests…
MJ:
… many scans, MRI’s spinal taps, steroid treatments, they could not figure out what was wrong. I was completely healthy except there was a problem with my optic nerve.
>

TReid: Finally, she found a neuro Ophthalmologist who tested her DNA. In September 2013 Maria was diagnosed with LHON.

MJ:
Leber’s Hereditary Optic Neuropathy. It is a mitochondria mutation that is passed down from the mother’s side. When the mutation is triggered you start to lose central vision. It can spread into the peripheral a bit, but most of the time your peripheral is saved.

Treid:
Within a month of receiving the diagnosis, Maria was legally blind.
Her response?!

MJ:
Ok, Now what?

TReid in conversation with Maria:
So you started experiencing vision loss and then you decide three months later you know what, I’m going to do this in public! [Laughter from both]

MJ:
Yeah, I know right!

TReid in conversation with Maria:
What made you do that?

MJ:
I thought about righting a blog previously as a health and fitness Guru if you will, but I never did. And so I always had that little bug in me I think.
When my vision loss came to a point where I had to deal with it, I thought you know maybe I should write about this?
Come January I basically wrote about what I’ve been going through and what actually was going on with my vision and what it was called.
I remember clicking publish and thinking uh [exhale] my gosh I hope, I hope somebody reads this. Well I got the hugest response. Positive response on this blog and people loved it!
They loved it and they were appreciative of my vulnerability and my openness to share what had been going on with me over almost the last year. I got the bug right then and there and said you know what I’m going to keep going with this because people like it.

TReid:
There’s no one size fits all plan for adjusting to blindness.
Chances are if a person is losing their vision and seeks assistance, they will learn of the vision rehabilitation system. For those fortunate enough to receive services, it would include personalized training to aid that person to remain as independent as possible.
That can mean getting back to work or school, learning how to perform all of the tasks they once did like cooking, traveling using a computer and more.
Maria figured out what she needed to go through the process.

MJ:
I realized I needed to get my head wrapped around this whole “I’m now blind” thing!
Before I could even attempt to figure out how I was going to you know cook or you know knit or [giggles] all the other things they wanted to teach me.
I thought I need to get my head wrapped around this. I actually need therapy, and I need counseling.

TReid:
Counseling to help work through the barrage of both feelings and thoughts about the loss not only of her sight, but all that comes with that;
her independence, her perception of herself, trying to figure out what it means to be blind.
Loss, is painful!

MJ:
I would lay on my bed you know crying and crying and crying and think [uh, gasp] how am I going to be a good blind parent?
How am I going to be the mom that I was.
How am I going to be the mom that I expect myself to be?

[Soft sad piano music]

MJ:
I honestly was planning on how I was going to exit this world.
And when I would do it.

MJ:
I thought, but you know I can’t leave my kids.

MJ: So I actually did therapy and group therapy weekly for about a year and a half. It helped me to know that all of my thoughts and feelings were totally normal. The things I was doing to propel myself forward everyday were the right things.
I will rank therapy as the number one thing that has helped me adjust to this new life.

TReid:
In addition to the emotional, Maria was trained in orientation and mobility.

I assumed Maria was proficient with technology and probably received training in either magnification or screen reading software.
So I had to ask about something I read on one blog post.

TReid in conversation with Maria:
You use dictation. Is that still your choice of input?

MJ:
It is, it is, it is.

TReid in conversation with Maria:
Do you do any keyboarding?

MJ:
Ok, here’s the back story on all of that!
alright, so I was always a pretty good typist when I was sighted.
Then I’m telling you Thomas, when I lost my vision and I could not see my keyboard any more….

[Fades out and Narration over MJ…]
>
TReid:
I am a big proponent of technology for all. Especially people with disabilities.
In some sense I’m an Access Technology evangelist…
I’ll tell anyone who will listen about the benefits it affords to people with vision loss or other disability.
I’m also a strong believer in the need to be proficient enough with a keyboard if physically possible
in order to have maximum control over your technology.

I did give Maria a bit of a hard time about her reliance on dictation.
But I’m not judging her!

Judgement, that’s one of the things that’s scary about
sharing personal stories.

TReid in conversation with Maria:
Have you regretted anything you published?

MJ:
I’ve made it a real point to keep it to just my own experiences. What I’ve been through. The good the bad and the ugly and the and the crazy , the funny, but then you know there’s nothing to regret.

TReid:
So is keeping an online journal helpful to the adjustment process?

MJ:
I think where it helped me is I was able to put my emotions and my story out there and I knew inside that maybe it would help somebody else either relate or understand what I was going through. And on the other hand, I do feel it hindered me a bit because I was drumming up all these emotions that were really quite difficult for me.

TReid:
Girl Gone Blind has lead Maria to other outlets

MJ:
I knew that if I wanted to start making something of Girl gone Blind I probably needed to get on Twitter and I needed to start reaching out to all of these other avenues. And that’s where RNIB Connect Radio discovered me.
Now I do a weekly segment for them ; chatting with Girl Gone Blind as a Lifestyle Blogger. We talk about different issues and different situations that we encounter.
I also do a podcast, we call it the LHON Report. We do interviews with people in the LHON community and we also talk about our experiences.
This has turned into this wonderful place that I have set myself in and I absolutely love doing it and it’s so weird for me to say that I love what I do and it’s all because I lost my vision.
It’s been a crazy three years but I’m headed to a good place I just know I am and I’m just going to keep that arrow pointed that way and see where it goes.

TReid in conversation with Maria:
Sounds like a great plan

MJ:
Oh And I’m going to learn how to type Thomas…

TReid in conversation with Maria:
Yes! Yeah!

MJ:
Giggles… Goals, Blind goals.

TReid:
There it is! Hash tag Blind Goals. (#BlindGoals)

[Laughter from both and MJ claps her hands!… audio fades out]

TReid:
Maria Johnson is journaling her way through her adjustment to blindness. She’s a girl gone blind, but she’s not traveling alone.

She’s inviting those with LHON , those experiencing vision loss and others to ride along. Hopefully relate to the experiences and maybe even be inspired to continue on their own paths.

Remember that thing about Maria not using the keyboard?
The truth is Maria didn’t let that become an excuse for not starting or maintaining her blog.

She held on to three words that she says can help her through most things…

MJ:
IGotThis! That was my mantra. I got this!

For more on Maria?

MJ:

My website is girlgoneblind.com.
I’m on Facebook at Girl gone Blind
and on Twitter a@Girl_Gone_Blind
And on Instagram @GirlGoneBlind.

TReid:
I’m Thomas Reid

[MJ: It is, it is, it is!]

TReid:
for Gatewave Radio,
[MJ: Ok, now what?]

TReid:
audio for independent living!

Following the Gatewave story, I included a “song” created using Maria’s words specifically “I got this”.

Transcript

[Opening Music- Nafset – A. Dvorak – Mesichku Na Nebi (Rusalka)]

TR:
You’re listening to Nafset Chenib, a 28 year old soprano born in Southern Russia.

NC:Now I live in Moscow. I have studied hear for five years and then I decided to stay here cause I love this city and from my point of view it’s much easier to live in the big city when you are blind rather than a small town.

TR:
At 6 years old Nafset began attending a Russian boarding school for blind children.

NC:
Unfortunately we had no choice . We didn’t have any opportunity for a inclusive education. So I was forced to be there at the boarding school – it was quite far from my house.

TR:
While she says she received a good education, Nafset believes not all of the components that make up the educational plan are fulfilled. Meaning both academic and social including daily living skills.

NC:
There are a lot of teachers that don’t know Braille in those special schools. From my experience I wasn’t taught to use the cane.

TR:
There was even some lacking in the general attitude regarding the capabilities of blind children. Nafset recalls how the school’s director responded
when she and her class mates wanted to learn the English language like children outside of boarding schools.

NC:
He told us “Are you gonna travel or what are you supposed to do with your English?”
You know it was quite offensive.

TR:
Ironically Nafset would come to not only learn English, but several foreign languages.

NC:
I’m not Russian. I’m Sarcasian so I can speak this Sarcasian language it’s called Adyghe language. I speak Russian. I speak Italian. Now I try to study German, mainly because of music.

TR:
Go ahead and add her ability to sing in Hebrew, Czechoslovakian and Spanish.

While the boarding school may have not imagined blind Russian students having a need for learning English, they did have a music school that would introduce Nafset to her passion.

NC:
I finished my musical school as a pianist. But I had supplementary discipline. It was vocal, opera singing. I started to participate in different festivals to sing in different choirs. I participated in the festival when there was the great opera singer Montserrat Caballé.

TR:
Among other notable experiences, add the time she sang for Pope John Paul the second!

NC:
I was able to visit Covent Garden Opera. They performed Semele by Handel and I was so impressed that I decided to go in for music more seriously.

TR:
Taking her dream seriously, Nafset had to fill one of the components that wasn’t addressed in the school for the blind. She decided to find an orientation and mobility trainer to learn how to use the white cane in order to better travel independently.

Now able to make her own life decisions, Nafset chose to pursue her college education in an inclusive environment, even though there is a special musical college for the blind.

NC:
After college I decided to pursue my education in Moscow. I studied at Victor Popov Academy of Choral Arts. It was wonderful time. I sing solo; students choir. I was able to collaborate with very interesting orchestras, outstanding conductors.

TR:
In some respects, a vocation as a singer seems like a natural fit for a talented person who is blind.

NC:
Conductors, they don’t trust you. I hear the question “How are you gonna sing if you don’t see the conductor?”
[Trailing sarcastic laugh!]

TR:
The misperceptions about blindness aren’t very logical and are more about the beholder’s limitations rather than the person who is blind.

In the 1980’s when asked by a reporter if Russia would participate in the first Paralympic games
A Russian governmental official famously responded:
“There Are No Invalids in the USSR!”

Outright denying the existence of people with disabilities in the country.

While progress is slowly being made, it’s not surprising that
many teachers are still against creating an inclusive educational environment for children with disabilities.

There continues to be a real lack of resources including Braille materials, access to information such as scholarly databases and information in general

While Nafset recognizes the areas for improvement, she’s very clear about her love of her country and wants to be a part of the solution.

NC:
I see that we have a lot to adopt from the United States. I’m eager to do that.

The thing is you know dreamed to study at the Manhattan School of Music and then to go back and to share my acquired knowledge and skills

TR:
Going after your dreams isn’t easy!
Most artistic endeavors require a great deal of practice and of course you need to make a living.

NC:
I work at the Moscow Art Theater. I sing for one performance. I like my job. It’s like a miracle for me.

TR:
Singing for one of the shows at the theater as well as occasional concerts,
Nafset is still uncertain of her future employment opportunities
but she remains committed to her dream.

So what exactly is stopping Nafset from pursuing her dream?
…The cost!

NC:
In February, I had a successful audition at Manhattan School of Music in New York And I was accepted and I have been granted scholarship it amounted to 15 thousand dollars, but the whole tuition fees 45 thousand dollars so I think I’m not able to pursue my education in USA.

I have not a bad education here in Russia but for me self-development is the main thing in my life. I want to develop myself.

TR:
Sometimes it’s helpful to think about our past successes to provide encouragement and remind us that we can prevail.

[Audio from 2014 Paralympics Closing Ceremony in Sochi, Russia]

In 2014 During the closing ceremony of the Paralympics in Sochi, Russia, Nafset was the soloist in the closing act.

NC:
It was just a great honor for me!

I was so glad to sing there …stadium included 40 thousand people. The show was televised as well.
TR:
Making her entrance , Nafset is on a platform which rises above the rest of the entertainers and participants on the field.

[Audio: Nafset begins to sing!]

The Olympic torch is extinguished as Nafset holds her final note!
[Audio: Nafset softly holding that final note]

NC:
It’s unforgettable experience for me!
TR:
unforgettable!

NC:
Maybe I am an Idealist but it’s my dream.

TR:
You continue to follow your dream!

TR:
Maybe her entrance during the Sochi performance is symbolic of things to come. Nafset rising above all – perhaps all of the obstacles on her path toward fulfilling her dream. Her passion represented by the fire can only be extinguished by Nafset herself.

You have to respect anyone pursuing their dream. Especially those who can still find time for gratitude when things don’t seem to be going as they wish.

NC:
I just want to say I’m very happy to have the experience in United States. Today I can tell the people here in Russia about the things that we don’t have here but you have there in the United States. I’m very thankful to all the American companies who work out the software and different technical devices to improve our lives. I really feel very thankful.

If you’re interested in knowing more about Nafset or supporting her dream;
check out her go fund me
http://bit.ly/Nafset That’s
bit.ly/Capital N lower case A F S E T

This is Thomas Reid, .

NC: “Unfortunately we have no choice”
Thomas usually concludes with some silly self-effacing close![]

for Gatewave Radio
Audio for Independent Living!

If you’re listening to this via the podcast or Sound Cloud and want to check out the YouTube video or link to Nafset’s Go Fund Me, go on over to Reid My Mind.com where I have all the links.

A final thought as I was producing this story…

One of the things I always loved and miss about living and working in New York City is the variety of people.
Among most of my friends and family, I’m one of the only people who didn’t mind riding the subway. I loved people watching and the occasional spontaneous conversations that either I would be a part of or have the chance to overhear or basically ease drop.

Interviewing different people for me brings back a similar feeling. Especially speaking with those I’d otherwise never have a chance to randomly meet.
Like those in a different country from other cultures sharing their experience.

You just listened to two people from very different back grounds in countries that were once the greatest enemies.

I guess I’m old enough where I still am amazed and appreciate the technology involved in making this conversation possible.

The conversation itself took place on our iPhones via Face time Audio.
It was just a few years ago that the idea of a phone with a touch screen
was believed to be a poor reflection of the future of accessibility for those who are blind.

I’m still impressed that our Wi-Fi connection held up as packets of information were sent back and forth from the Poconos in Pennsylvania, USA to Moscow in Russia.

Maybe it’s just my level of Geekiness that thinks that stuff is still pretty cool! And Nafset , reminds me to continue to be thankful!